The story of an enduring smile

Jackie is a dear friend of mine, and as part of MND week I wanted to share her inspiring and courageous journey. When I see Jackie and her sister for coffee, I always leave filled to the brim with their positivity and I'm always met with two matching lovely smiles.  Read their story below or on the MND website.


Jackie's story
Life doesn’t get any better. You’ve just married your college sweetheart Shane. You’re building your dream home. You’re in your prime at 24, running about on a touch football field with an eager smile. You’re biggest worry is the unflattering red jersey you have to wear. It’s a beautiful evening with a light breeze sweeping over Bellerive Beach from the great Southern Ocean. You’re warming up, tossing the ball across to that happy husband of yours who sends it on to your twin sister, Anna. You drop the ball- it doesn’t matter- it’s a bit of mixed social fun.

Drop the ball again and in typical Aussie style, one of the boys on the side might poke a bit of playful fun. But if this is the worst life throws your way, you can leave those muddy boys behind at the end of the game.

As the season wears on though, even you begin to wonder why you’re fumbling easy catches and finding it hard to maintain balance when gently tagged by opposition. Games are becoming increasingly exhausting, so you put it down to a lack of fitness.

There’s soreness in your forearms, no big deal. You water ski, play netball, dance, anything could have strained them. In any case, you’ve got a house to get ready, dinner to prepare for your new husband and a bicycle waiting for its early morning ride into the city for work.

Months pass. You’re back on the touch footy field in that same flattering uniform. But there’s something you’re struggling with, that no other team mate would. You can’t trim your finger nails for the game. The strength required for the clippers just isn’t there. Immediately, Anna is by your side, quietly taking the clippers into her own hands.

It might have been then. It might have been gradual. But in that moment the two of you shared a worrying thought- something is wrong. Something is very, very wrong.

Life Takes an Unexpected Turn for Jackie

At this stage, even though Jackie could amazingly still find the strength to pull herself up out of the water when water skiing in New Norfolk, it was time to get some medical answers. At such an exciting time in life, it had initially felt easier to ignore subtle symptoms, but increasingly they became more difficult to hide.

Test after test, local doctors failed to find answers for Jackie’s forearm pain and lack of strength in her hands. During nearly eight months of uncertainty, the first neurosurgeon said, “I don’t think you have MND (Motor Neurone Disease) but I wouldn’t bet my house on it.”

However, in February 2006, after more tests, the diagnosis of MND became a reality for 25-year-old Jackie. MND causes the nerve cells (neurones) controlling the muscles that enable us to move around, speak, breathe and swallow, to fail. With no nerves to activate them, muscles gradually weaken and waste. MND affects each person differently with the average survival time after diagnosis being 3 to 5 years.

Defying the odds, today Jackie continues to fight MND with a courage and strength that is testament to the slow-progression of her condition. Being fit and healthy prior to diagnosis put her in good stead, but in meeting Jackie, it is clear that it’s her will and innate strength that carry her forward. This isn’t to say that Jackie hasn’t needed to be carried on her journey. Husband Shane left his job as an IT consultant and is now her full time carer. Watching your young wife deteriorate must be an unspeakable reality, but to watch Shane is to see a husband who is fiercely loyal, courageous and refreshingly cheerful despite his role.

For Anna life has changed. Living nearby and cutting back work hours, if Jackie needs anything, Anna is there. If Jackie wants to meet with friends, it is Anna by her side. If Jackie needs a straw held up to her mouth to sip her latte, it is Anna’s hand that lifts the cup.

The unwavering support from Jackie’s family and friends can be seen from the twinkle in Jackie’s eye. Today, Jackie can no longer walk, eat or shower without assistance. As she sits in her wheelchair at the table, words are difficult to get out during the interview and to pick up Anna’s playful young toddler is something Jackie cannot do. The question had to be asked; how MND had changed her life.

The open-ended question could have received a lifetime’s worth of self-pity and despair, rolled into one long sentence beginning with ‘why me.’ But it didn’t have half the chance. Jackie answered simply and succinctly without the slightest hint of a downside.

“I get to spend more time with my family and friends,” came the beautiful response.

It was an effortless reply from Jackie, not in the physical sense of delivering the words, but in the sense of her outlook on life. It was natural for her to immediately consider the positive outcomes of a debilitating disease.

It’s the type of response that has the power to stop you in your tracks, right as you’re busily moving through a hectic day. There was no pause, no slumped shoulders from the wheelchair, just a sweet smile and a few short words.

It is little wonder then, that since Jackie’s diagnosis she has embraced life just as fully as she did prior. Two months later, Jackie and Shane were surprising Shane’s parents on a pacific cruise on the Diamond Princess, Jackie smiling in the happy holiday snaps with the same glow as always.

During 2007, the pair flew every month of the year except for one; from Western Australia to Townsville to South Australia, no corner of the country was off limits. It didn’t take long for Anna and husband Heath, Jackie’s elder sister Nadine, and both sets of parents to catch the travel enthusiasm, often meeting Jackie and Shane at their scenic locations.

Since returning from a recent 8 month trip around Australia in their caravan, Jackie and Shane are back home relaxing. The girl who “still feels bad for parking in the disabled space,” continues to inspire all those around her with the positive attitude she exudes.

MND might have taken a few things from her but two things will always remain; her belief in living life to the full and that twinkling smile. Both come from a place deep inside and will always shine far more brightly than the challenges Jackie bears.

A day-to-day insight from Jackie’s carers

No one close to Jackie anticipated that a carer’s role would become part of life as they knew it. But in the case of Jackie’s loved ones, it’s as if they wrote the rule book and had spent a lifetime in preparation for it.

After diagnosis Jackie’s family, friends and loved ones became the weaves of a fabric that kept daily life together. And it became Shane and his very close family who managed the vital threads.

Let’s hear what daily life is like.

Shane Chugg- Jackie’s husband

Shane’s typical day begins between 7-8am after usually a restless night’s sleep as Jackie needs to be moved and rubbed during the night. Jackie has her tablets at 8am and gets up between 9:30-11:30am (sometimes later) which gives Shane a little time to tinker in the shed, work on the computer or relax. During this time Shane is still on call, ready to roll Jackie every hour or so and give her sips of water.

When it’s time to get up Shane helps Jackie to the bathroom then out to the table for breakfast. As it takes time for Jackie to eat, breakfast usually takes 30 minutes before they hit the shower, get dressed, brush hair and are ready for the day ahead. With a bit of time before lunch, often Jackie will sit in her recliner, play with Taylah the dog or the two will head out in the car.

Most days Jackie has an afternoon lay down to rest her weary muscles. That normally happens from about 3 to 5 during which time Jackie tries to drink lots of water. Shane cooks dinner while Jackie is in bed and she gets up for a few hours until about 7 or 8pm when she calls it a night. Whenever they break away from that routine, say to go out for dinner, it can throw Jackie out and she gets very tired and can sleep in until after midday the next day.

“I've heard other carers say ‘I feel like I'm the one with MND’ and I think that rings true with me too,” explains Shane. “Because Jackie and I are so closely tied, what one suffers so does the other. We were a young working couple with great jobs, loads of optimism and big plans for our future together. To let go of all our hopes and dreams and live for today is a big change. I think it's great that I'm able to be here for Jackie.”

Through some luck and the help of family the two have been able to afford to stay in their lovely home without Shane needing to work. Also thanks to the love and support from friends and family they have got everything they need including medical equipment, a hydrotherapy spa, a wheelchair van, a caravan, holidays around Australia and so on. For Shane he says, “I guess I'm living a dream life, except that it has a great big dark cloud called MND hanging overhead.”

“Jackie's attitude is amazingly positive, she is genuinely hopeful. The doctors have told Jackie something cold, hard and brutal but Jackie still thinks to herself, ‘I can beat this.’ Jackie often sheds a tear for others, ie watching a touching true story on TV, but it's very rare that Jackie will shed a tear for herself,” explains Shane.

Shane can see how someone suffering from a life threatening illness could slide into depression but he could never imagine Jackie going down that road. There is just too much hope, love and happiness inside her. In Shane’s words, “Jackie raises us all up and if she only got back half the love she gives she would still have enough for two lifetimes.”

There have been several changes in Shane’s life- some good and some difficult. After Jackie was diagnosed with MND he felt devastated. Yet, at the same time he tried incredibly hard to be strong for Jackie and blocked many of the feelings out (and thinks he still does to this day).

“I worry about Jackie a great deal, I often feel frustrated and anxious. I'm tired and run-down almost all the time,” says Shane. “On the positive side I now understand what's really important. I treasure life, family moments and fun times with friends. Jackie's love soothes all my aches and pains, she makes me feel warm and happy, she's truly amazing.”

“I really miss the good old days and it saddens me to look at what we've lost. At the same time I feel grateful for every day I get to spend with Jackie and I'm hopeful that we can continue to be happy together for many years to come.”

Anna Macpherson - Jackie’s twin sister

For Anna and Jackie, sisterly catch ups involve a very different set of activities these days, but the two have a way of finding the joy in even the smallest things. According to Anna, after getting up Jackie often enjoys a Jacuzzi on warm days, a look around their garden in the wheel chair, and if up to it, shopping with Anna.

“We go to massage, appointments or anywhere else she may need to go, for instance catching up with friends,” explains Anna. “Just recently we caught up with our Immigration work mates for High Tea at the Grand chancellor. We enjoy planning holidays, and also Ireland (Anna’s daughter) keeps us entertained when I visit.”

Anna, her husband Heath and daughter Ireland are always busy doing all sorts of things with Jackie and the rest of the family. As a sister, Anna has Jackie and Shane on her mind daily and plans things around them if need be. There is never a time that Anna does not consider what she might be doing or what she might like to do.

“I will drop anything to assist Jackie and Shane, as they are our priority,” says Anna. “For pretty much everything we plan we think about Jackie in some way. It certainly has been difficult to see Jackie like this and I always hope there will be a cure just around the corner. Mainly it's about spending quality time with her and caring for her too, with her daily needs.”

After Jackie was diagnosed, Anna worked four days a week to ensure she could make the most of everyday with her. Anna would take her to appointments and give Shane a chance to rest for a day. Then Ireland came along, and the excitement was far reaching, something for all of them to enjoy. Anna then had 15 months off work on maternity leave, which gave her the opportunity to spend a lot of time with Jackie and she could watch Ireland grow up.

“Ireland loves to help Jackie, with giving her drinks, food and even climbing up on her lap to give her cuddles,” comments Anna. “She is fully aware Jackie needs attention and assistance and is quick to assist her with all sorts of things- even wiping her nose for her when Jack sneezes- amazing what a two-year-old can do!”. Ireland often says to Jackie “You right Jack?”!

Anna keeps in her mind just how strong her sister is- such a fighter that never lets her situation get her down. According to Anna this is evident in her amazing ability to have such a strong and positive attitude five years on. “Jackie’s attitude toward potential treatment options is positive and some have been explored as she is willing to try anything that may help.”

“It is devastating and I wish that a cure could make her better, but we all remain strong for Jackie (and Shane), as how could you not when she is so amazing! I think her positive attitude in some ways makes it easier to deal with whilst seeing her fight MND. It certainly encourages you to make to most of EVERYDAY. We always did but even more so now.”

 




 

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